Autoimmune diseases typically don’t show symptoms outright, and doctors can frequently misdiagnose a more serious disease as something lesser.
Three years ago, author Jade Lennox had painful flare-ups unlike any that she ever experienced, but according to a colorectal surgeon, she only had a fissure and was prescribed a sitz bath and topical medicine.
A few weeks later, Lennox found herself in the emergency room with an infection from ulcerative colitis, a inflammatory bowel disease that causes long-lasting sores.
“When she came in for my emergency surgery, her face was nearly as pale as mine. She apologized and explained I didn’t look or sound like I was in that much pain during my appointments,” said Lennox.
Lennox adds that given there are more than 100 kind of autoimmune diseases, she is not alone in the struggle of managing illnesses that are not very “visible.”
“Many autoimmune conditions do not have definitive testing and thus accurate diagnosis requires testing, physical examination, and a careful assessment of symptoms,” said Rheumatologist Daniel Solomon, a professor of medicine at Harvard Medical School and chief of the section of clinical sciences at the Brigham and Women’s Hospital.
“Symptoms like fatigue and pain are not very specific. Thus, they can help diagnose an autoimmune disease, but they also can be observed with many other conditions,” added Solomon.
Lennox in her article “But You Don’t Look Sick: What it’s like to live with a ‘silent disease’” shares the experience of Joy Brandys, an artist from Buffalo, N.Y., who does not have the typical symptoms of rheumatoid arthritis, such as deformity in the hands.
“No one would guess I’m in pain most of the time or fatigued,” she says. “I’m always concerned that if I decline an invitation or leave early from a social gathering that someone wouldn’t understand.”
Lennox compares autoimmune diseases to a brutal sports game, where your insurance company acts as the referee; throwing flags when things get out of hand, but sometimes things get rough before they step in.
The coach is then your doctor. But like in a real game, the coach can’t always predict everything, so you as the player have to be defensive and offensive in the strategies you have for yourself to fight off your opponent, which is the disease.
Paige Wyant, associate chronic illness editor at the Mighty, talked with Lennox about her chronic joint pain and fatigue that didn’t get close scrutiny for years, which was then finally diagnosed as Behçet’s disease, a rare condition that causes blood vessel inflammation.
“When I go in for an appointment to discuss long-term treatment options, but they see that perhaps my eyes are really bloodshot that day or I have an outbreak of erythema nodosum bumps on my legs, that’s what gets their attention,” Wyant says.
“Their primary focus becomes the symptom that is visibly flaring that day — even if it’s not the symptom that is bothering me the most.”
Solomon says that in order to keep up with his patients, he asks them to keep a daily or weekly diary that might help him better understand what they’re going through.
He adds there are technologies available, like smartphone apps, that send regular updates of your condition to care providers, but ultimately, Solomon agrees that it’s more about doctors taking the time to really listen to their patients.
Wyant agrees. “The most successful interactions I’ve had with doctors happen when they turn away from the equipment, their computer, their notes and simply listen to what I’m telling them, said Wyant.
“They ask for my thoughts, and engage in a conversation.”
Lennox adds in her article that it’s perfectly OK “to be loud to make up for your silent disease.”
Read up more on her experiences and be assured it’s OK to demand more from your doctors.